Sunday, February 11, 2018

tamoxifen to arimidex

How did I get to a new oncologist and what was the deal with the bad of Tamoxifen? I will attempt to address that here... 

So, I went in September for my check up with my oncologist. Leading up to that time, I had sunken to an all time low. Lower than I had ever been in my life. So low. I didn't care if I lived or died. I felt completely dead inside. There was one thing I could trace it all to. Tamoxifen. 

When I went on Tamoxifen, I had to stop Wellbutrin. An antidepressant (an SSRI to be exact). SSRI's reduce the efficacy of Tamoxifen. I followed blindly. Like a lemming. Now, keep in mind, what happened to me does NOT happen to all people. I'm just special. :) 

My doctor that handles my antidepressants adjusted my medication to make up for the loss of the SSRI. That was fine. I was going to be ok. I just knew it. 

Life went on. I went on vacation. I got a new job. I loved my new job. I lost some weight. Summer came. I auditioned for a musical and got in. Went to rehearsals. All the while I declined. My fatigue did not improve. My mental state did not improve. In fact, they got worse. 

I never really talked about it to anyone. I was cancer free! Wasn't life great? My surgeon told me that PTSD was normal. So, I went to my doctor and was placed on anti-anxiety medication. This is normal. I just needed more help. I had PTSD. Life is going on. 

While life went on, I continued to decline. I got to a point that I would come home from work and just sit and stare. Seriously. That's what I did. I would go to rehearsal or see my dad in the nursing home and sit and stare at the TV or whatever. In that time, my dad died. I declined further. My dog died. Further down. 

Life was going to improve. We were going to go on vacation to Myrtle Beach. The BEACH! The ocean! I love the ocean. The Sun... my grandson was going to start kindergarten. Life was good! I still declined... 

I started crying every day. But not like crying crying. Just having tears roll down my face. Brad told me he had serious concerns about me. I told him (finally) I would do whatever he wanted. I just didn't care. I would do it, but I didn't think it would matter. 

The show we were in went on. We performed. I was miserable. I was dead inside. 

I went to my oncology appointment. A Week prior, I had labs drawn. The labs showed I was post menopausal. Of course at the lab visit, the office staff told me I was wrong about the date of my visit. It seems they saw that there were two appointments scheduled and took it upon themselves to cancel one. I thought I had done that when I scheduled the second appointment. They screwed it up. Blamed me and I cried. and cried. and cried. I saw the oncologist. I had written out a ton of questions. Brad had to ask them because all I could do was cry. Just sat there with tears rolling down my face.  I was told that I needed to go to therapy. I said I wanted to go off the tamoxifen so that I could get back on the wellbutrin. I was asked why I went off the wellbutrin. Well, because you told me to. I need to get back on it. I was told that there may be some new studies that show you can take SSRI's while on Tamoxifen. (since when? what?). I just needed therapy and a positive attitude. You're fine. So, my oncologist VERY reluctantly agreed to let me go off tamoxifen and start arimidex. (which i was previously told I could do if my labs showed i was post menopausal). 

I left that day and cried and cried and cried. But I was STOPPING the Tamoxifen. End of story. and that weekend... my husband took me away. and that was when I started to breathe again. 


Well... I hit my second Cancerversary. It's been two years  since I heard the words "you have cancer". Oddly, it was two years ago today that I posted on Facebook that I had cancer. I told my family and close friends first. Then I told my co-workers... then after some dust settled and I had seen the surgeon, I told the world.  

That's funny. A Funny statement. The dust settled. The dust hasn't settled. Not really. It's been two years and for two years I've been fighting. The fight hasn't ended. Two years in and I wonder if it ever will. 

So, what has happened in this past year? So much! 

I went on Tamoxifen after I finished chemotherapy. I had to because my cancer was estrogen and progesterone driven. Because of that, I am "required" to take antihormonal medications (a type of oral "chemo"). So, I took the Tamoxifen. It caused me a TON of fluid retention. I caused me to go into depression I hadn't known since my mom and grandma died and to go further into depression that even that. (partly because I couldn't take the one antidepressant that helped me because it reduced the effeciacy of the Tamoxifen). It caused me to want to die. It caused my heart to feel nothing but death. But, I was reducing the chance of recurrance. Not a fair exchange..... 

I also got a new job. The job I had when I was diagnosed did not hold onto my position. They held my job for me MUCH longer than legally required by the federal government. They decided, AFTER, I was released to return to work (only part time) that they could no longer hold my position for me. So... I was jobless. So, I looked and waited upon the Lord. I listened to Him and waited... and waited... and waited... What seemed like an eternity to me, was not. I started my current (and I hope my LAST) job on March 20, 2017. I hope this is my last job for many many reasons. :) 

I lost some weight. Not nearly enough, but some. I lost the steroid face! That was AWESOME!

I got new boobs! No, I didn't have reconstructive surgery. But, because I got a new job, I had new insurance. So, I was eligible to get new prosthetic breasts! These are so much better than the old ones and a bit bigger and even more realistic! I also got swim boobs! So, this week, Rebekah and I are going to look at a mastectomy shop for a swim suit top that will hold my swim boobs! 

I also changed oncologists! Such a great thing for me. I now see Dr Williams at The James Comprehensive Cancer Center at The Ohio State University. Such a great decision. Wish I had done it so much sooner. 

So... I went off the Tamoxifen. That in itself is a story. ( I will post a blog entry on that, hopefully later this week). Thought I was post menopausal. Found out I wasn't. Then I found out a month or so ago, that I finally truthfully am! 
I am now on Arimidex. It blocks the hormones too, but doesn't shut down my ovaries since they shut down on their own. 

I have survived another year. I wish I could say I have done more than survive, but that's not factual. I've not. I've survived. I know that is an accomplishment, but I wish I had more. But don't we all sometimes? This has been a year of learning. Not one I would wish on anyone... But It's been another year. 
Another year of being with my husband. Another year of watching my kids. Another year of loving on my grandkids. Another year of learning. Another year of meeting new people. Meeting new friends. Another year of seeing where God will take me. Another year... That's a gift. Not everyone gets another year. 

Thank you for another year. 

Sunday, October 1, 2017

An Open Letter to Cancer

An Open Letter to Cancer
You Suck. I hope that is blunt enough for you. If I sound rude – too bad! You suck.
I was informed you were on a journey with me on February 8, 2016. At that time I had no idea how long our journey would be together. Much longer than I want. However, I also knew in my heart that you were a part of me on January 29, 2016. You left traces of yourself. So, while you were a surprise and shock, there was a little warning.
You took so much from me and from my family. Things that can never be changed. You stole a part of my soul. A part of my soul that I didn’t have to give away. You took it and it’s gone. A part of me is forever changed.
Some additional things, I will list now. You stole  ---
v  My breasts. It took me a long time to get them! I was not an early bloomer. We joked in my junior high years about who could stop a whistle or a necklace by dropping it down their shirt and I never could. I never really grew until I was 16! Then I had them! They were FABULOUS! I was so proud to have an attractive chest and figure. You STOLE that from me.   I used my breasts to feed my children. They were such an important part of me and how I identified myself. People say you don’t need breasts to be a woman, but they help! They ended up full of disease and were tossed into medical waste.
v  My hair. I always loved my hair. But you stole it. I was bald. Bald.
v  Memories and joy from my only daughters wedding. I only remember snippets from that time. Most memories come from photos taken on that day and the time preceding it. It’s not fair! That event will never happen again and I couldn’t focus and have poor memory of it because of YOU!
v  My sexuality – which was weak to start out with! But if I thought I was sexy at all – That’s gone now. Why? I don’t have a figure! Again, I’m told that breasts don’t make you a woman, but they made me feel like one.
v  Time playing with my grandsons. “Oma is too tired to play.” “Because of the cancer?” Yes.
v  Friends. Not that I had a lot anyway, but some that I thought were close, vanished! I think they were scared. I was too! But it may have been too much for them. YOU were too much for them.
v  Financial stability. I had NO INCOME for six months! My sick time was used up, I didn’t qualify for long term disability thru my company. NO INCOME! Of course, my husband worked. But when you have a lifestyle that relies on TWO incomes, one does not cut it.
v  My husbands truck. Yes. I blame you for this one. It was a great vehicle, purchased at a great price and totally paid for. He sold it. Why? We had to survive. We needed food, electric… those things. He did what he felt he had to do so that we could make it.
v  My memory. Again, it had some shaky places before hand, but now, it’s a mess! There are things that have even happened recently and I just don’t remember them.
v  My job. I blame you. If I had felt well all the time, I could have returned to work. If I wasn’t hoping to get long term disability, I could have TRIED to work part time. But it didn’t happen that way. You know, I wasn’t completely happy there, but shouldn’t it have been my choice if I was going to go back? Because of you, I didn’t get to make that choice.
v  My sanity and normalcy. Not that I was ever truly sane or normal, but thanks to you I’m over the top. I had moments where I was so far over the top during treatment it was WILD! I have moments now where I am so depressed, angry and crazy and full of emotion! Things brought to me since you joined my life journey.
These are just the things I can think of now. You are evil and awful and mean.
I would see people or talk to people after I was diagnosed and no one knows what to say. Some people don’t get it. To be fair and honest, I never did before you. However, I know now. You ask questions. You don’t say things like “boobs are overrated”. “You look great bald” “at least you’re here”. While these may be true, they are not always comforting. They can be painful reminders of a loss that I was dealing with. It can be more comforting to say “I’m sorry”. “are you resting” “what do you need?” or just sit and hold hands and offer love.
I tend to compare myself to others. So, I compared myself to those who had battled you before me and those battling you at the same time as me. A woman I go to church with worked part time thru her chemo. She had chemo, then had her double mastectomy. I had my double mastectomy and then chemo. A friend from school worked all thru her treatment. I didn’t work. I couldn’t work. (1) I felt like total crap ALL THE TIME. On chemo days I was exhausted, then nauseous. It continued until about the day before my next chemo. (2) I was hoping to get Long Term Disability (LTD). I couldn’t go back to work or I would have to start the whole LTD process over. (it was all denied anyway) Of course, by the time all appeals went thru, I was close to being done with treatment. I felt like crap anyway, so why go back then? So, I wondered (and still do) how others could work and I couldn’t. How could they have strength and energy to work even part time when trying to do normal things, like shower, wore me out! For that matter, I’m STILL exhausted! EVERY DAY! So tired! I’ve been told, this may not go away for another few months. UGH!!!
Depression has been a companion of mine for over 20 years. But, thanks to you, I now also have PTSD! What a joy! The thing with this is, you never know what may trigger an attack! But they come! The panic, the fear, the anger. It all comes and you must try and deal with it while acting like a normal person! I had come to terms knowing I’d be on meds the rest of my life. Now, I have even more! During my treatment you caused me mood swings I hadn’t seen since my teenage years. Those were fun! I screamed and yelled at my family. I threw temper tantrums. I can’t believe my family kept me! Of course, also because of you, I don’t remember all of it. Good for me, but my FAMILY remembers! So I also get the guilt that goes with it.
Guilt. That’s another thing you gave me. Guilt. I felt guilty having cancer and causing people to have to care for me. Guilty because I couldn’t work. Guilty because I couldn’t always care for myself. Guilty because I couldn’t help with things. Guilty for the looks my family gave me. Guilty when I couldn’t sleep. Guilty when I slept during the day. Overwhelmed with guilt. Guilt because of the way I felt physically, mentally and emotionally. Guilty for my attitude. Guilty for any bad behaviors. Guilty when we had to spend money because we didn’t have it because I wasn’t working! GUILTY!
BUT… you know what else? You did NOT expect this, but these things happened too… GREAT THINGS!
v  Members of my family helped us out a LOT! They provided meals, gift cards, money … one wonderful cousin took me to almost ALL my chemotherapy appointments so I wouldn’t be alone and so that my husband could work and support us! Members of our church brought us meals as well! God spoke to these people and they followed his guidance.
v  I may have been bald, but I had some cute hats and FOUR cute wigs! I could be any style and do nothing! Plus as my hair has come back, it’s curly and blonde! I am proving that I really AM blonde and the curls are FABULOUS!
v  While I may have lost some friendships, I managed to gain new ones! I was also able to re-ignite the flame of some other longtime relationships and found some people who love me that I didn’t know! There were also relationships that were very strained prior to my diagnosis that were quickly repaired and were able to move forward with love, friendship, caring and hope! I had a friend take me out of my house once a month for lunch! She also took me to post op appointments.
v  The first words I heard the day I lost my figure were from my husband. He said “Hello beautiful”. He thought I was beautiful and he still says so. He also thinks I’m sexy still.
v  Because of God’s grace and goodness – a gofundme page was started for me! Because of this and other financial gifts of love from friends and family, we survived our ordeal and we were even able to give our family Christmas gifts! Plus the money from selling Brad’s truck, we purchases a decent vehicle very reasonably and we were able to keep our heads above water until I started working again.
v  I stated earlier that I lost my job because of you. But, God still had a plan. I followed where He led and ended up with a great PART-TIME job as a case manager with a cancer hospital! I work 4 days a week, 8 hour days, no weekends, no holidays. These people at this job really seem to care! They ask how I am doing. Am I still in remission, etc, etc! It has been such a huge blessing!
v  I have found out how much my husband loves me. He has stood beside me and held my hand or behind me and pushed me when needed. He has been caring, kind and even stern when needed. He NEVER has walked away. He loved me thru every day, moment, second. He prayed with me and for me. Some spouses walk away or grumble and complain about the attitudes and behaviors that their partner exhibits when going thru such a terrible disease and treatment process. Brad NEVER did. He always showed me love and grace. Always.
Other things I want you know include my weight. Oddly enough, because of steroids and chemotherapy meds, I gained weight. Over THIRTY POUNDS! How can you be nauseous and gain weight?! I don’t know, but it happened!
Heartburn and GERD. Oh my gosh! I think we are buying stock in tums! It’s awful!
You put me in menopause. Which is whatever, except no one knows how to treat it! My cancer, YOU, were driven by my hormones. When hormones cause cancer, how do you treat someone who has hormones shutting down causing that person to go nutty, have horrible hot flashes and all the other fun that comes with it!
This has been quite a journey. We’re not done yet either. I still have to deal with the PTSD. I still have to take hormone blocking medication that fights the cancer returning, and will have to keep taking that for another 9 years. I lost a lot because of you. I also gained a lot. But what I gained was not because of you, but because of God’s grace and love for me. It’s a journey I never wanted to take. I wish I never had. However, I was recently told, that the Lord knew I would take this journey. He knew it would happen and it is now my responsibility to use this journey to my benefit. To use it to help others. To show the love that was given to me to others in this situation.
I still haven’t landed from this trip yet. But I know when I do land, I will be able to say I beat you. You’re a speck. There is a bigger picture and my God is bigger than you. There are many times I don’t glorify Him like I should, but He gets me thru.

I’ll never like you or come to terms with you – but know I’ll never forget you either.